There Are Zebras Among Us: Compassionate Care for Those Diagnosed with a Rare Disease

By Risa Hanau, LCSW
Clinical & Community Educator, AuthoraCare Collective

There is a common saying in healthcare: “When you hear hoof beats, think horses not zebras.” The phrase acknowledges the hope that most people will have a common problem, not an uncommon one or a rare disease. While this saying might be true for the vast majority of people out there, there are zebras among us. For those people suffering from a rare disease, acknowledgement within the current healthcare environment can be difficult, costly, time-consuming and downright demoralizing.

The common approach to medicine is system-based, or specialist-based, not whole-person or holistic, which increases the likelihood that people with rare diseases that impact multiple body systems will collect lengthy problem lists without having an actual unifying diagnosis for years and years, if ever. And, along the way, they are sent the message, especially if they are a woman, that most of what is troubling them could probably be taken care of by more exercise, a better diet, more sleep and stress management. Rare disease sufferers could benefit from these things to be sure – but more helpful is an actual diagnosis, treatment plans, coordinated care with an identified lead physician or provider and a recognition of suffering. 

Professionally, I’m a licensed clinical social worker and have worked in the end-of-life and hospice world for over 30 years. Over these many years, I have learned the importance of patient-centered care: treating a person, not a diagnosis, and respecting that the patient knows themselves the best. As healthcare professionals, we are at our best when we seek to make use of a team, a team that communicates and engages in coordinating care rather than saying, “That’s not my department.” While subject matter experts are important, the most impactful job expectation is to serve as an empathic patient advocate – no matter your role or discipline and no matter how rare and complex the diagnostic presentation is. 

The juxtaposition between my professional life and my personal life has been staggering. My professional identity is that of the empathic professional – the person who knows how to access care, how to counsel those suffering, how to educate other clinicians on how to have hard conversations and to always treat a patient as a person, not a diagnosis or set of symptoms. Yet, it took over 12 years for me to finally get a diagnosis of Ehlers-Danlos Syndrome (EDS), and when I did, I learned two things from the physician. The first was that while he was the one to diagnose me, he would not continue to see me, because there were no disease-mitigating medications for him to offer. Second, while EDS would probably not shorten my life, he suggested I find a good pain management guy and a psychiatrist. He left the exam room without doing anything to provide actual care, as I sat there trying to absorb all that he had told me without providing referrals or resources. 

It appears when the hoof beats of a zebra are heard, the medical community tends to run away from – not toward – the person who is seeking care. Having a rare disease gives an entirely different meaning to being a self-advocate.

In the future, all levels of healthcare, from learner to leader, are called to focus on the person in front of them, their multitude of needs and the coordination of care with quality-of-life made a priority for all patients, including those with rare diseases. 

About the Author:
With nearly 30 years of experience in the hospice field, Risa Hanau, LCSW, the Clinical and Community Educator at AuthoraCare Collective, is well known throughout the Carolinas and beyond for her expertise in areas ranging from palliative care and hospice care, advance care planning, clinical ethics and staff and caregiver self-care. Throughout her endeavors, Risa has been driven by an understanding of the importance of clinical staff education and support as a means to excellent bedside care.